Wednesday, August 17, 2016

Traveling with PCS (post-concussion syndrome)

On August 6 I got on a plane in DFW and flew to SLC. I describe how that went down on FACEBOOK.

The rest of the week was a series of checks and balances, where I took every medication I had and rationalized my pain with the truth that I wouldn't have another option to see these wonderful people for a very long time.

I want to make it clear I'm not trying to get sympathy. I chose to go to dinner. I chose to take this trip. Period. And while I wasn't entirely sure how it would affect me, I did know the odds were good that I'd want to curl up in a dark room and stay there for the duration of the trip. And I did. I really, really wanted to do that. It wasn't necessarily bravery that kept me from doing so. I had my daughters with me, and I didn't want them to worry about me. I really wanted to visit my family and friends.

Living where I live in Oklahoma and having spent a year holed up in my house with this condition, it's been very much like a prison. I go to the doctor. I go shopping with my husband, and spend as little time as possible outside of the house. I've escaped to church a few times. But I feel so isolated. And as hard as it was to endure the trip to UT, as much pain as I put up with every day, as miserable as it was to keep moving every day when my body was screaming at me to find a hole and just sit in it, I needed to go.

Checks and balances. There are things you do for your body, and there are things you do for your soul. Sometimes you just need to see your friends. Your family. Sometimes your soul just needs certain people.

The trip home that I scheduled did not end up being the trip home that happened. I scheduled an early morning direct flight. I spent the week psyching myself up for exactly that. Even the night before, I was dreading it. Tamping down my anxiety, especially after how hard it was to endure the flight out to UT. I just didn't want to do it again.

But I got us all checked in the day before, printed our boarding passes, and we were all set when we got up early Sat morning and drove to the airport. I walked up to the kiosk to check my bag and suddenly my flight information was all different. I waved over a ticket agent. "Oh," she said. "Storms in Dallas have cancelled 2 flights, maybe 3. This was the best we could do for you. Unless you want to discuss other options." Other options meant flying home another day. I wasn't mentally or emotionally prepared for that. I honestly didn't know if I could do that. But suddenly my direct flight home was 7 hours waiting at the airport for two flights ping-ponging us across the western half of the US.

I didn't look at her. "No," I said. "We'll just do this." We completed the bag check processes. Tears filled my eyes as I contemplated how drastically my day had changed, the implications it would have to my levels of pain.

Then one of my daughters said something and I knew I wasn't going to be able to give in to my feelings. I had to be strong. Because the alternative was to make them be strong instead, and that was a non-option. We found a place to sit and I explained the change. I called Bryan so he didn't get up and drive to the airport and waste his day sitting there waiting for us. We wandered through security and then to our gate (through a bookstore), got some food, and sat down to make the most of our wait.

I know most of you are wondering why I didn't just leave and reschedule the flight for the next day--when I probably could have gotten a direct flight. It would have made sense. But you have to understand I had been traumatized by the flight out, and I had spent a week--a full WEEK--psyching myself up for the flight home. I just didn't feel like I could handle leaving the airport and putting myself through all of that again the next day. I felt like we had to see it through that day. Even though it was going to be awful. So much worse. 

As it turns out, the wait was probably the worst part. Someone who is not hypersensitive to noise wouldn't notice airport noise, but hours of it grated on my senses. I held out and waited to take my pain meds until we were on the first flight, which made it surprisingly endurable. Also it was a small plane, which may have made a difference. When we hit the ground at LAX there wasn't time to think about how much pain I was in. We had to get from Terminal 6 to Terminal 4 in 20 min to catch our connecting flight. We made it as they were boarding our flight to Dallas--a 777-200 Airbus. I've NEVER been in a plane that big before. It was an incredible experience that I managed to enjoy despite being in incredible pain.

Some things I noticed that made the trip home more endurable were that knowing what to expect helped. Also, I know for a fact that I had heavenly help. I know I was given more strength than was my own. I could feel it as it left me on our descent to Dallas, when it was no longer needed. I'm so grateful for that.

We dragged ourselves off the plane and through the airport to baggage claim, where Bryan was waiting for us. Seeing him was like an oasis in the desert! I didn't have to be strong anymore. I could collapse (and almost did right there!). The drive home was still a little more than 2 hrs, and my exhaustion hit full force then. We ate, which was good since we hadn't had anything decent all day. Just snacks. I started hallucinating, one of the things I do with this brain injury, especially when I'm really tired. I experienced "halos" like people with migraines sometimes get, and had to keep my eyes shut for the duration of the drive. Between the two it was like little flying saucers were attacking our truck. So confusing.

We got home, and I managed to stay up for about another hour before going to bed. And slept until about 1pm the next day. That was 4 days ago, and I'm still recovering, still taking all of my pain meds every day to try and stave off the pain. I hope my head forgives me soon.